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Old 06-26-2011, 08:10 AM
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reverett123 reverett123 is offline
In Remembrance
 
Join Date: Aug 2006
Posts: 3,772
15 yr Member
reverett123 reverett123 is offline
In Remembrance
reverett123's Avatar
 
Join Date: Aug 2006
Posts: 3,772
15 yr Member
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Twenty years or so into this. The first ten were under the illusion of essential tremor which changed to PD about 2001. For reasons that I will go into in a moment, I have some doubts about the diagnosis.

Started on Requip immediately. No attempt at patient education or anything else. Almost criminal in retrospect. Added sinemet shortly thereafter. Requip and I got along relatively well. At one point I was taking 32 mg/day plus 800 mg sinemet. Started the Dk dance and by elimination found Requip to be the culprit. Quit it pretty much at once although I know you shouldn't but I seem to have gotten away with it. Been six months now.

I am currently living on levodopa/carbidopa 1600 mg per day with minimal side effects and intend to whittle that back as some other things stabilize. It is these "other things" that are giving me pause now. One is gastroparesis which has long been a factor and must be handled gently.

The other one is a bizarre problem with potassium shifting back and forth between being inside the cells and being in the bloodstream. In the former state nerve and muscle function are both disrupted and I am near total paralysis. The things that trigger it include (but are not limited to) adenali8ne surges and insulin surges. Adrenaline does NOT give me the power to leap tall buildings the way it is described in the literature. Just the opposite. And small, diabetic-style meals are a must.

So, what does that have to do with levodopa/carbidopa and PD in general? Maybe nothing but maybe everything. For example, my reaction to adrenaline is much more in line with what many of us experience when something like confrontation is encountered. And the insulin reaction to ldopa has been known since the Thirties.

And there is a study on Medline by a team led by Jill Smith that showed that ldopa blocks the ability of muscle to take up glucose from the blood which would thus mean more insulin to trigger my problem. Ms. Smith found that stretching the muscle corrected the blockage and it does seem to dothe same in my case if done in time.

So, my current strategy is to stabilize the situation and keep on paring down the sinemet.
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000.
Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well.
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